Radiation & Health Updates

They say a picture is worth a thousand words. This photo describes what my life has been like lately. I am not tolerating radiation; in fact, I had to cancel treatment this past week and have no idea if I can even continue – I’m not even halfway done. The only other option anyone has to offer me from here on out is chemo. The odds of it working are incredibly low, but the odds of it further harming (or killing) me are very high. 

I have never felt so awful in my entire life. I fall asleep at the drop of a hat during the day and don’t wake up feeling any better. I spend 10+ hours in bed (waking frequently) and awake in the morning feeling worse than I did when I went to sleep. I have this horrendous cough that strains every muscle in my body, and often leaves me retching uncontrollably over the garbage bin. Nearly every time I try to talk, it causes a coughing fit that leaves me reeling and crying. I’m taking pain meds around the clock and am still in excruciating pain half the time. Getting in with palliative care or a pain management provider for the last few months has been yet another ridiculous headache that showcases our broken healthcare system. 

I can do very little for myself anymore, and have such little energy or capacity that eating and cleaning myself are about all I have left in me. Even if I have an appetite, I can’t eat much, or I end up more nauseated or in a ton of pain. I grow out of clothes each week, despite losing muscle and fat… I’m retaining a ton of water which just adds to the discomfort and general feelings of illness. 

I want to be healthy. Why is that so much to ask?!?!?! I want to decorate for Christmas, make Christmas crafts with the kids, bake, go shopping and not need to use a motorized scooter to get around. I want to be able to do hobbies I enjoy. Even to stay awake to be able to read a book. I’m not asking anyone to do these things for me. I want to be able to do them myself!!! It isn’t a big ask! …yet each day I feel weaker and lower on hope. I pray every single day for a miraculous healing. I’m alive, but this isn’t living. This is suffering and trying desperately to find any ounce of good or joy or pleasure. 

I truly do not know what will come next. I don’t know if I will do treatment this coming week, if I’ll ask for a longer pause, or if the radiation oncologist will put his foot down and tell me we can no longer proceed. He’s already suggested I may want to stop and pivot to chemo instead. 

My body and I have battled this storm for over 6 years now, and I’ve never been this lost, exhausted, or defeated. I know it must be easy to think or say, “Keep going, you’re so strong, you can’t give up…” but you’ve never been in these shoes. Imagine the sickest you’ve ever been. Now imagine being that sick for Months with no end in sight. And every day you feel worse and weaker. You want SO badly to get better, to feel something other than horrible, to LIVE. 

I don’t want to give up. I don’t want to die. But this.. this isn’t “living”… this is trying every day to not die, to feel the worst physical and emotional pain day in and day out. And most people either see me as a lost cause and can’t hold hope with me, or invalidate my experiences when they say I’m not allowed to feel or say certain things because of the discomfort it causes them. Every provider feels the need to remind me how sick I am and everything that’s wrong with me. Everyone has opinions, but no one has the answer. 

I’m doing my best to find any possible comfort amongst the incredible pain. I appreciate those who have reached out, and I apologize if I don’t respond or take days (or weeks) to do so. Please know I’m doing my best, but I just can’t keep up with anything anymore. If you want to help, please lift me and my family up in prayer. Pray for miraculous healing. For strength. For guidance. For peace. 

I want to Heal. I want to Live. I need a miracle.